Chester's story

Ian said, “We spent the first few weeks of the twins’ lives at Chesterfield hospital before we moved to Sheffield’s neonatal ward. The doctors could tell straight away that Chester was struggling. He spent most of his time on a ventilator to help him breathe, and in December he was diagnosed with Tracheobronchomalacia, which meant his airway was weak and at risk of collapsing. While he was at hospital it collapsed three times, and he had a cardiac arrest. At one point it took 15 minutes to resuscitate him. We didn’t realise at the time, but later we were told that that is what caused his brain damage.

“We spent exactly a year in hospital with Chester before we were finally allowed to take him home. There were so many times when we thought he wouldn’t survive – at one point he was even given his last rites – so when we first came home, it was terrifying. He had been surrounded by doctors and nurses for over a year, and it was daunting to be on our own as parents. Thankfully, none of the terrible things we thought of actually happened, and we spent our time getting to know Chester and managing his condition.”

Lisa added, “Ian and I decided to quit our jobs and look after Chester and Rhianna full time. We both used to be carers for the elderly, but we never imagined caring for our own children like that. Chester is almost completely deaf and has very poor vision, so we have to be his eyes, his ears, his everything. Our focus is always on the twins. It can be exhausting, but we wouldn’t have it any other way.”

In 2017 Chester’s Community Nurse went to see the family at home, and she could tell that Lisa and Ian were tired, so she arranged for them to visit Bluebell Wood. Ian said, “The first time we visited it was a really hot, sunny day. Chester and I were by the window overlooking the garden. He looked up at me, and I just remember crying. Not because we were in a hospice, or because I was afraid, but because I felt safe. I knew that whatever happened to Chester in later life, he’d be looked after at Bluebell Wood.”

Lisa added, “After visiting the hospice for the first time, we couldn’t wait to stay overnight. Everyone was so friendly, and we fell in love with the place straight away, especially Rhianna. She said it was better than staying in a hotel! We just felt so relaxed - Ian and I got the best night’s sleep we’d had in years and Chester was so comfortable too. The Care Team did all the little things that we do at home to make him feel safe, like putting on a DVD and dimming the lights, and it made such a difference.

“We feel so looked after when we come to visit; it’s like we’ve known the Care Team and the other families for years. It’s such a happy place and Rhianna never wants to leave. She likes to dress up like one of the Nurses and pretends she works there. She even has her own lanyard!”

Ian added, “Coming to Bluebell Wood is like a weight off our shoulders. Lisa and I are both realistic about Chester’s future, but we know that whatever happens to him we have a plan, and somewhere we can go where he’ll be looked after.”

Tilly has hypoxic ischemic encephalopathy, which means she didn’t get enough oxygen to her brain when she was born. Now she comes to Bluebell Wood with her mum, Rebecca, and her big brother, Gabriel, where she loves meeting new people and relaxing in the spa pool.

William is Paul and Michelle’s ‘miracle boy’. Before he was born he had a stroke and spent the first nine months of his life in hospital. Despite facing so many challenges, William has never stopped smiling, and he loves coming to Bluebell Wood.

Mia was a happy, bubbly nine-year-old who was always on the go. In August 2018 she was diagnosed with a rare condition where the body reacts aggressively to an infection, and she died eight days later. Her family spend valuable time together at Bluebell Wood after she passed away.

Four month old Lily died at Bluebell Wood in February 2017 after being born with a rare heart condition. Her mum and dad, Ella and Ryan, call the hospice their lifeline, and they still visit with their son, Oliver.

Charlotte Lee calls daughter Gracie her snow baby. Born in January 2009 following a healthy pregnancy, Gracie’s arrival was a few months after young Sheffield mum Charlotte had received the surprise but welcome news that she was expecting. However, over the next few years Gracie had some developmental issues, which led to a sad discovery.

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

Olivia is a bubbly, chatty teenager who loves singing, and all things Harry Potter. She lives in Sheffield with her mum and dad, Michelle and Russell, and her brothers, Harry and Finley, and loves spending time at Bluebell Wood.

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